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  1. M

    Treatment with the AIDS cocktail

    Elizabeth, thanks so much for posting this! My 42 year old husband is 2 years in with advanced bulbar onset and respiratory involvement that qualifies him for hospice. But I wonder if it might be worth asking his neurologist about this … it doesn’t hurt at this point.
  2. M

    Diagnosed

    Jam, I understand. It took me awhile to move through the stages of understanding it, past denial (wondering if it could be something else), through anticipatory grief, etc. Be kind to yourself. We have two little kids so we didn’t consider traveling to other clinics, but if you are able to do...
  3. M

    Diagnosed

    Hi Jam, I’m sorry to hear of this news. When we were doing a 2nd opinion we encountered a Dr. who was similar to the one you saw (very direct, not very empathetic, etc) and so we decided to go with the other Dr. who we found was kind. My husband was diagnosed at age 40 and just turned 42. I...
  4. M

    bulbar onset diagnosed 8/2024, has anyone passed away when they could still walk and use their arms?

    My PALS is in a similar situation. He has advanced bulbar progression and respiratory involvement. I don’t know if the respiratory involvement is advanced or not, but his MIPS is at -28 and the RT couldn’t get a valid FVC but said it was around 30% when she attempted. I know it can be harder...
  5. M

    Insurance denied claims from months ago - lactose free formula

    Here is the update (file attached with personal info removed). Moral of the story - don’t give up!
  6. IMG_5336.jpeg

    IMG_5336.jpeg

    • Marieb425
    • Media item
    • Comments: 0
    • Category: PEG feeding tube help
  7. M

    Wanted: Family Vacation with Dreamy Beach

    We went to the Big Island after diagnosis, but my husband’s ALS is primarily bulbar/respiratory and he wasn’t in a wheelchair then (or now - almost 2 years later). Kauai was before diagnosis (2 times) and we really love it there. It just would be a long trek from New England; we live near...
  8. M

    Wanted: Family Vacation with Dreamy Beach

    We love Hawaii and used to enjoy traveling there. We went for a trip the fall after my PALS was diagnosed. We’ve been to Kauai a couple times but also really enjoyed the Big Island. The geography was so interesting driving around both islands. Here’s a picture from the big island (Mauna...
  9. IMG_0814.jpeg

    IMG_0814.jpeg

    • Marieb425
    • Media item
    • Comments: 0
    • Category: General discussion about ALS
  10. M

    Insurance denied claims from months ago - lactose free formula

    Thanks Laurie, I was just looking at the appeals information yesterday but didn’t fill out the paperwork for that yet. They have to reply by August 19th to the state insurance commissioner office. I filed the complaint and I was surprised that they sent a letter to Premera that same day!
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